My planne vir 2021 is:
Originally written in Afrikaans. Translated by mom. Please scroll down for English.
1. My lyf kort beter maniere.
Dit is lastig as ek nie my lyf kan beheer nie en ek pla ander mense met nonsense en, nog erger, as ek hulle seer maak. Ek probeer al my hele lewe lank beheer daaroor kry, maar hierdie jaar het ek meer moed as ooit tevore, want my gesin verstaan uiteindelik wat gebeur met my lyf en aanvaar my en bemoedig my en help my so mooi as ek sukkel. My hele gesin ondersteun my so mooi en, behalwe daarvoor, glo ek die Here gaan my beter laat mooi vertel van Sy grootheid deur my te help.
2. Ek wil met my hondjie ‘n band opbou.
My hartsbegeerte was altyd om ‘n troeteldier van my eie te hê en my pappa en sussie het my so bly gemaak toe hulle vir my ‘n hondjie gaan kry het. Hondjie is die mooiste, oulikste en spelerigste en vraatsigste wat ek al ooit gesien het. Ek voel so goed soos die rykste man in die wêreld nie kan hoop om te voel oor al sy skatte nie. Ek wil graag hierdie jaar ‘n band opbou met Hondjie sodat hy my sal leer verstaan al kan ek nie met hom praat soos mense gewoonlik met honde praat nie.
3. Ek wil my mamma help om nog kinders te vertel van Spelling to Communicate,
want ek gun al my non-speaking vriende die lewe wat ek nou het. Ek wil ten minste nog 10 mense help sodat hulle nog 10 ander kan help, want so gaan ons dit regkry dat ons nog non-speaking vriende ook leer kommunikeer.
4. Ek wil leer skaak speel
sodat ek met my vriendin, Stephanie, kan online skaak speel. Ek is so bly ek het ‘n vriendin wat my motiveer om nuwe goed aan te pak. So, ek wil graag haar uitnodiging om skaak te leer speel aanvaar en dit saam met haar aanpak sodat ons saam-saam ‘n skaakklub kan begin saam met ander non-speakers.
5. Ek wil ook ‘n boekklub begin saam met ander non-speakers.
Ek het gehoor hoe Elizabeth Vosseller my ma vertel hoe ‘n boekklub kan werk en ek is baie gretig om dit te probeer. My mamma behoort al jare lank aan ‘n boekklub. Dit lyk vir my so bitter lekker en ek sal ook graag dit wil ervaar saam met my vriende.
6. My lyf moet leer om nie so te oorreageer nie as ek my ontstel oor iets.
As ek wag, en met my mamma se hulp, eers gesels oor wat my ontstel het, dan gaan ek dit beter kan uitsorteer. My lyf vergeet nog soms dat ek kan kommunikeer en dan maak ek onnodig chaos sonder dat ek die probleem oplos en dan maak ek die situasie erger. As ek net eers onthou dat ek nou kan kommunikeer, dan sorteer ons tjop-tjop ons probleme uit. Ons is baie lief vir mekaar en wil mekaar graag help en mooi maak om die lewe vir ons almal beter te maak, maar as ons nie kan kommunikeer nie, werk dit nie goed nie.
Ek kan nou kommunikeer. Ek moet net oefen dat ek dit nie vergeet nie en dat ek die paadjies in my brein wat my lyf laat oorreageer kan doodvee, want ek het nou ander uitwegte en ek is dankbaar daarvoor.
Mag 2021 my en my gesin en almal vir wie ons lief is en voor omgee,
se mooiste jaar wees.
Mag God ons bewaar en gesond hou.
Mooi wense vir almal wat my blog lees vir 2021 en dankie dat julle my help om my ervarings en planne te deel met die wêreld sodat ander kinders, soos ek, ook gehelp kan word. Dit is hoekom ek my diepste vrese en vreugdes met julle deel. Help my asseblief om ander non-speakers te bereik en hulle ook te help om my voorbeeld te volg en ‘n nuwe lewe – met kommunikasie – te lewe.
My plans for 2021 are:
1. My body needs better manners.
It’s tricky if I can’t control my body and I’m bothering other people with nonsense and, even worse, when I hurt them. I’ve been trying to gain control of it all my life, but this year I have more courage than ever before, because my family finally understands what happens to my body and accepts me, encourages me and helps me beautifully when I struggle. My whole family supports me so beautifully and besides that, I believe the Lord is going to help to be able to better tell, about his greatness, by helping me.
2. I want to build a bond with my pup.
My heart’s desire was always to have a pet of my own and my dad and sister made me so happy when they went to get me a puppy. “Puppy” ( The dog’s name is “Hondjie” which translates directly to “Puppy”) is the most beautiful, cutest, most playful and greedy dog I’ve ever seen. I feel as good as the richest man in the world can’t hope to feel about all his treasures. I would like to build up a bond this year with “Puppy” so he will be able to understand me even though I can’t talk to him like people usually talk to dogs.
3. I want to help my mom tell more kids about Spelling to Communicate,
because I whish for all my non-speaking friends the life I have now. I want to help at least another 10 people so they can help another 10 others, because that’s how we’re going to get more non-speaking friends communicating as well.
4. I want to learn to play chess
so that I can play with my girlfriend, Stephanie, chess online. I’m so glad I have a friend who motivates me to tackle new stuff. So, I’d like to accept her invitation to learn playing chess and to tackle it alongside her so that we can start a chess club together for other non-speakers.
5. I also want to start a book club
with other non-speakers. I’ve heard Elizabeth Vosseller tell my mum how a book club can work and I’m very keen to try it. My mommy has belonged to a book club for years. It seems so enjoyable to me and I would also like to experience it with my friends.
6. My body must learn not to overreact when I’m upset about something.
If I wait, and with my mommy’s help, first talk about what upsets me, then I’m going to be able to sort it out better. My body still sometimes forgets that I can communicate and I unnecessarily cause chaos without me solving the problem and then I make the situation worse. If only I remember being able to communicate now, we’re sorting out chop-chop our problems. We love each other very much and want to help each other to make life better for all of us, but if we can’t communicate, it doesn’t work well.
I can communicate now. I just have to practice not forgetting this and that I can wipe the pathways in my brain that let my body overreact because I have other ways out now and I’m grateful for it.
May 2021 be for me and my family and for everyone we love and care about,
the most beautiful year.
May God keep us and keep us healthy.
Best wishes for everyone reading my blog for 2021 and thank you for helping me share my experiences and plans with the world so that other children, like me, can also be helped. That’s why I share my deepest fears and joys with you. Please help me reach other non-speakers and also help them follow my example and live a new life – with communication.
Baai baai, tablet, hallo vriendin.
Scroll down for English version. Original in Afrikaans, translated by Mom.
Ek is so in my skik dat ek my tablet en selfoon kon los, want dit was die moeilikste ding wat ek nog ooit probeer het.
Ek is al baie keer vies gewees vir myself oor ek nie die ding kan uitlos nie. Dit is my grootste prestasie wat ek nog behaal het. My prys vir hierdie prestasie is ‘n ware vriendskap met ‘n vriendin.
Ek het altyd my tablet gesien as my vriend, maar ook my vyand omdat dit my gehelp het om te kalmeer, maar my ook angstig gemaak het.
Omdat ek nie kan praat nie, was my tablet my enigste geselskap. Nou is ek deel van ‘n ander wêreld wat heeltemal anders werk as toe ek nie kon kommunikeer nie. My tablet was maklike geselskap, want hy het nie terug gepraat of van mening verskil nie. My tablet het my nooit hartseer of kwaad gemaak nie, dit was net my eie reaksie wat ek mee moes “struggle”.
Nou is dinge anders, want ‘n vriendskap met ‘n mens is soveel meer gekompliseerd, want die ander persoon het ook ‘n wil van sy of haar eie en gevoelens en idees en planne. Nou is my vriendskap heeltemal anders en dit is vir my ‘n onbekende wêreld wat ek nog nie ken nie en dit is ‘n baie moeilike ding om uit te “figure”.
My hart is soms bang ek doen dit nie reg nie en soms is ek benoud dat ek my vriendin gaan verloor, maar ek leer nou hoe ‘n vriendskap in die pratende wêreld werk en dit is soveel beter as toe ek nie kon kommunikeer nie en net my tablet gehad het. Al is dit soms moeilik en selfs vreemd vir my, bly die vriendskap met my vriendin steeds baie beter as met my tablet.
Ek het nog net een vriendin waarmee ek gereeld gesels. Ek hoop dit is die begin van nog vele ander vriendskappe vir my en vir haar, want ons het altwee jare se verlore tyd en vriendskappe om in te haal.
‘n Gedig wat ek vir my vriendin, Stephanie geskryf het en ‘n gedig wat sy terug geskryf het:
|Non – speaking friendship |
By Nicolaas Paulsen
I have a friend
I have a non-speaking friend
I have a friend who understands being non-speaking
I have a non – speaking friend who understands being non – speaking
And we chat with each other
About being non – speaking
Even though we are non – speaking
Being non – speaking is solitude
Being non – speaking is silence
Being non – speaking is sometimes without friends
Having a non – speaking friend makes all the difference
Now I am not solitude’s victim
Now I am not my silence’s victim
Now I am not without a true friend.
Having a non – speaking friend I can chat to, makes all the difference.
Thank you Stephanie for being my friend
I love you as my friend and
I will always remember you as my first non – speaking friend
that I can chat with.
I love you for being my friend.
|Life’s true treasure|
By Stephanie Pringle
Friends are gems
Too precious to hold
Imagine having very few
How priceless they would be
Ring of friends
String of mates
Crown of love
Too valuable to measure
Life’s true treasure
Bye bye, tablet, hello girlfriend.
I’m so pleased that I could let go of my tablet and phone. It was the hardest thing I’ve ever tried.
I’ve been frustrated with myself, many times, for not being able to leave the thing alone. This is my greatest achievement. My prize for this achievement is a real friendship with a girlfriend.
I always saw my tablet as my friend, but also my enemy because it helped me calm down, but also made me anxious.
Because I can’t speak, my tablet was my only company. Now I’m part of another world which is completely different from when I couldn’t communicate. My tablet was easy company because he didn’t speak back or differ from opinion. My tablet never made me sad or angry, it was just my own reaction that I had to struggle with.
Now things are different because a friendship with a human being is so much more complicated because the other person also has a will of his or her own and feelings and ideas and plans. Now my friendship is completely different and it is still an unknown world that I don’t know yet and it’s a very difficult thing to “figure out”.
My heart is sometimes afraid I don’t do it right and sometimes I’m distressed that I’m going to lose my girlfriend, but I’m now learning how a friendship works in the speaking world and it’s so much better than when I couldn’t communicate and just had my tablet. Even though it is sometimes difficult and even strange to me, the friendship with my girlfriend remains much better than with my tablet.
I still have only one girlfriend I talk to regularly. I hope this is the beginning of many other friendships for me and for her, because we have both years of lost time and friendships to catch up on.
My greatest day since being able to communicate, was SpellX 2020.
I have always dreamed of making my words be heard over the world so that people can hear what I have to say about my most beautiful words and the way my body and my disruptive ways are my prison. My words are now set free to fly all over the world. To explain how that makes me feel, is like trying to put spilled water in a glass with only one finger to help: it is impossible!
I am overjoyed.
I am not only happy for myself, but also for ALL the other presenters and also for Stephanie and Zekwande, my friends from South Africa, who were such great hosts.
My moment of greatest joy was when I saw someone commenting on my presentation that my words is the reason why they will keep on fighting for all non-speakers to be heard. That is all that I want to do. I want other non-speakers to have the same privilege I have.
To be able to communicate, is the most important thing in life. Without communication, I had no hope, no joy, no life.
Thank you to I-ASC, the sponsors and every one who made this event possible.
Non – speaking joy My silence No speaking No communication No sharing opinions No requests No “ I love you”s No “please” and “ thank you” s is not me My body, Perfect and beautiful Unreliable Uncooperative Stupid Aggressive is not me My disruptive ways Pulling Pushing Noises Socially unacceptable behaviour is not me My words are who I am My words My heart My soul My life My love My faithful companions My long hidden treasure My reason not to give up My most greatest joy I love my words I love sharing my words I love bringing hope to others with my words I love loving my family and friends with my words I love studying because of my words I love saying what I feel because of my words I love being noticed because of my words I love making my biggest dreams come true because of my words My words are who I am Listen to my words, Do not look at my silence, my body or my disruptive ways MY WORDS ARE WHO I AM MY WORDS ARE WHO I AM
This is the original version of the poem ” Non-speaking joy” written by Nicolaas Paulsen for and presented at SpellX 2020.
ORIGINALY WRITTEN IN AFRIKAANS & TRANSLATED BY MOM.
SCROLL DOWN FOR ENGLISH VERSION
My dom lyf kom tweede
Vandat ek my brein kan gebruik, by my Wiskunde-lesse, het ek baie meer beheer oor my lyf. My lyf was nog altyd my grootste, mooiste vyand. Hy het my jare lank verhoed om te kan leer, maar daai dae is nou verby.
Al sukkel my lyf soms nog, my brein kry uiteindelik genoeg oefening sodat ek vrede kan maak met my lyf wat so neuk.
Die groot verskil het gekom toe ons met die Wiskunde klasse by Mnr. Schalk begin het. Dit het my lewe verander. Ek het nou ‘n kans wat niemand my nog voorheen gegee het nie.
My brein is so gelukkig oor ek die kans kry om te kan goed leer wat my interesseer en wat moeilik genoeg is dat my brein oefening kry.
My lyf se simpelgeit is so onbelangrik in Mnr. Schalk se klasse, want ek en Mnr. Schalk verstaan mekaar mooi. Mnr. Schalk het nie voorheen met kinders soos ek gewerk nie, maar Mnr. Schalk het ‘n mooi hart en help my om mooi kalm te bly.
Hy gee ook uitdagings vir my brein wat my baie goed laat voel.
Ek het by Mnr. Schalk geleer dat dit oraait is om soms iets verkeerd te kry. Hy hou nie op om vir my moeilike werk te laat doen net omdat my lyf dom is en ek nie my sakrekenaar se knoppies mooi kan druk nie.
My brein is so opgewonde oor elke les dat ek nie kan wag vir my lesse om te begin nie.
Ek doen my lesse met my mamma se hulp op die rekenaar elke dag (via Zoom). Ek doen ook groepsklasse waarin daar ander gewone kinders ook is. Ek voel dan asof ek na ‘n gewone klas kyk op die rekenaar en dit laat my goed voel dat ek saam met gewone kinders kan skool gaan. My lewe is soveel beter vandat ek die Wiskunde lesse so doen.
My brein kry kans om te oefen en my lyf kom tweede, want al is my lyf soos hy is, kry ek steeds kans om my brein te gebruik en dit is baie lekker vir my.
Ek is bekommerd oor my vriende wat nog nie hulp gekry het nie en wie steeds blokkies moet sit en bou in ‘n babaklas iewers. Ek hoop daar kom ‘n mnr Schalk oor hulle pad ook sodat hulle dieselfde kans kan kry as ek.
My stupid body comes second
Since I can use my brain, at my Mathematics lessons, I have much more control over my body. My body has always been my biggest, most beautiful enemy. He has prevented me from learning for years, but those days are now over.
Even though my body sometimes struggles, my brain finally gets enough exercise so that I can make peace with my body that does not do what I want it to do.
The big difference came when we started classes at Mr Schalk with Mathematics. It changed my life. I now have a chance no one has given me before.
My brain is so happy to get the chance to learn things that interests me and is difficult enough for my brain to get exercise.
My body’s silliness is so unimportant in Mr. Schalk’s classes, because Mr. Schalk and I understand each other beautifully. Mr. Schalk has not previously worked with children like me, but Mr. Schalk has a beautiful heart and he helps me stay pretty calm.
He also gives my brain challenges that makes me feel very good.
I learned from Mr. Schalk that it is okay to sometimes get something wrong. He doesn’t stop doing difficult work with me just because my body is stupid and I can’t push my calculator’s buttons perfectly.
My brain is so excited about every lesson that I can’t wait for my lessons to start.
I do my lessons with my mommy’s help on the computer every day (via Zoom). I also do group classes in which there are other ordinary children as well. I then feel like I’m looking at an ordinary class on the computer and it makes me feel good that I can go to school with ordinary children. My life is so much better since I do the Mathematics lessons in this manner.
My brain gets a chance to practice and my body comes second, because, even if my body is like this, I still get a chance to use my brain and it’s very nice for me.
I’m worried about my friends who haven’t gotten help yet and who still have to sit and build blocks in a baby class somewhere. I hope there comes a Mr. Schalk across their way too so they can get the same chance as I am.
My tablet, my vriend en my vyand
Originally written in Afrikaans by Nicolaas. Scroll down for translated version in English.
These pictures upset me a lot because it shows how autistic children, like me, and our parents frequently misunderstand each other. It’s not as simple as these pictures make it seem.
Hierdie prentjies ontstel my baie omdat dit wys hoe ons outistiese kinders en ons ouers mekaar dikwels misverstaan. Dit is nie so eenvoudig soos wat hierdie prentjies dit laat lyk nie.
Ek is so moedeloos. As ek myself kom kry, dan is ek oppad na my tablet toe. My lyf vat my soontoe, of ek nou wil of nie.
My brein is geprogrammeer om na die tablet toe te gaan as ek nie iets anders het om myself mee besig te hou nie. Dit is ‘n vreeslike gesukkelry om my lyf op ‘n ander pad te kry. Ek wil so graag my lyf leer om ander goed ook te doen, maar voor ek my kom kry, dan het ek weer my tablet beet.
As ander mense by ons kom kuier, dan gryp ek hulle fone. Dit is so “embarrassing” dat ek myself so wangedra. Die mense skrik hulle dood as ek hulle fone gryp en ek sien hoe benoud hulle raak. Ek verstaan dit en ek wil regtig nie hulle fone vat nie. So, dit is beter as hulle hul fone in hulle sakke hou dat ek dit nie sien nie, want sodra ek dit sien, kry ek my lyf moeilik beheer en steek ek myself in die skande as ek hul fone gryp.
Ek wil ook vertel van die voordele van my tablet.
Ek leer graag ander tale aan deurdat ek na bekende stories kyk wat in verskillende tale vertaal is. Ek hou ook daarvan om die prentjies op verskillende maniere aanmekaar te las sodat ek dan my eie stories in my kop opmaak.
Dit is baie lekker vir my om met my tablet te speel, maar daar is ook ‘n baie slegte kant aan my tablet spelery.
Dit is wanneer ek vashaak op ‘n spesifieke storie of plek op my tablet. Dit maak my net so mal soos vir die mense rondom my as ek dieselfde ding oor en oor en oor speel. Dit is vir my net so kwaai irriterend soos vir die ander wat saam kyk of dit aanhoor. Dit is net my lyf wat daarop vas haak. Ek wil eintlik ander goed luister en kyk, maar my lyf raak vas gevang in dieselfde pad wat dan oor en oor loop en dit is vir my baie sleg as dit gebeur.
Daar is goed waarvan ek baie hou, soos in Lion King wanneer die papa leeu die baba leeu vir die ander diere wys, maar ek is te bang om daarna te kyk, want dan weet ek verseker dat my lyf gaan vashaak. Dit is soos ‘n maalkolk wat my lyf insuig, en dan kan ek om die dood nie ontsnap daarvan af nie. Dit is my grootste struikelblok as dit gebeur. My ouers dink ek is vreeslik lief vir Lion King en sit dit graag vir my op, maar eintlik maak hulle my mooi bang wanneer hulle dit doen. Dit is dan my ergste as hulle dink hulle doen goed, maar eintlik wil ek net sê “help my om iets anders te kyk.” Daar is ander stories wat dieselfde doen as Lion King, maar vir my is Lion King die ergste maalkolk. As iemand my laat kies wat ek wil kyk, sal my lyf altyd Lion King kies, al maak dit my bang.
Dit is die neukery van my dom lyf. Hy maak nie soos ek wil hê hy moet maak nie. Dit is waarom my tablet my vriend en my vyand is.
Toe ek nog nie so mooi kon spel of skryf nie, het ek soms probeer kommunikeer deur die iPad te gebruik om boodskappe te probeer uit kry. Ek het byvoorbeeld sekere dele van my stories oor en oor gespeel om my mamma se aandag te probeer trek en ‘n boodskap vir haar te stuur, maar sy het dit eers begin verstaan dat ek vir haar ‘n boodskap probeer stuur op dié manier toe sy besef het ek is slimmer as wat almal gedink het, toe ons met Spelling to Communicate begin het.
Ek verstaan hoekom ouers moedeloos raak van dieselfde stories oor en oor kyk, want dit is vir my net so vervelig soos vir hulle. Ek vra asb baie mooi dat ouers hul kinders asseblief moet help om uit daai maalkolk uit te kom van daai selfde storie oor en oor tot vervelens toe.
Dit was my gunsteling tydverdryf toe ek klein was om stories soos Barney en die Loflaaities te kyk, want dit het ander kinders in gehad en ek was so alleen in my tronk sonder kommunikasie, dat die kinders in die Barney stories my enigste geselskap was. Dit is hoekom ek dit so graag gekyk het.
Die storie van Nemo was vir my mooi omdat dit die vissie met ‘n te klein vin in gehad het en hy het ‘n kwaai avontuur gehad.
Ek hou ook van stories wat lyk asof die karakters met my praat, want dan verbeel ek my ek praat terug met hulle soos ‘n kind met ‘n stem. Daar was baie jare wat niemand geweet het dat ek slim is en ook dink oor dinge nie. Dit is hoekom niemand met my gepraat het asof ek verstaan en kan terugpraat nie.
Ek is nou groot en ek wil nou ander stories kyk, wat groter kinders in belangstel, maar nou haak my lyf vas op daai kinderstories wat ek jare terug begin kyk het.
Dit is swaar om te praat oor die verlede, maar dit is nodig sodat ander kinders wie nie so bevoorreg is soos ek nie, ook gehelp kan word.
Ek raak soms so angstig as ek nie die tablet in die hande kry nie, dat ek dit heeltemal verloor.
Dit is ‘n moeilike balans, want soms help my tablet my om te kalmeer. Die bekendheid van die ou storie en die feit dat ek weet wat gaan gebeur, is vir my gerusstellend omdat ek dit kan manupileer soos wat ek wil. As ek daarna soek om te kalmeer en ek kry dit nie, dan raak ek vreeslik angstig. Dit is ‘n manier om myself te kalmeer, maar terselfder tyd is dit ook my grootste vyand. As my lyf vashaak op dieselfde plek, dan kalmeer dit my nie, maar maak my weer angstig,
My enigste raad vir ouers is om met hul kinders ‘n goeie verhouding te hê, sodat hul kan sien wanneer die tablet vir hul kind ontstel en wanneer dit hul kalmeer. Die probleem is dat dieselfde ding kan my kalmeer en ontstel. Dit is moeilik om te sien wat is die regte een, wat wanneer geld en wanneer om die tablet af te vat en wanneer om dit te gee.
As ek voorbereid is daarop dat die krag gaan afgaan, of dat daar nie sein gaan wees nie, kan ek dit hanteer. Maar as dit onverwags gebeur, ontstel dit my.
Ek maak myself kalm deurdat ek na iets soek wat ek kan gebruik in die tablet se plek om my brein mee besig te hou. Dit is wat die tablet eintlik vir my doen. Dit is ‘n manier om my brein mee besig te hou. As ek iets anders het om my lyf en my brein mee besig te hou, het ek nie die tablet nodig nie. Dis is hoekom my lyf na my tablet toe gaan as ek nie iets anders het om my brein mee besig te hou nie. Ek weet nie hoe verslawing is nie, maar my lyf het die tablet nodig om te kalmeer, maar as ek vas haak op iets, laat dit my verloor waarvoor ek dit aanvanklik gebruik het, om te kalmeer .
I get so discouraged. Before I can prevent myself from doing it, I’m going to my tablet. My body takes me there, whether I like it or not. My brain is programmed to go to the tablet if I don’t have anything else to keep myself busy with. It’s a terrible struggle to get my body on another road. I really want to teach my body to do other things as well, but before I know, I have my tablet in my hands again.
If other people come to visit us, I grab their phones. It is so embarrassing when I misbehave like that. The people get such a fright when I grab their phones and I see how distressed they become. I understand that. I really don’t want to take their phones. It is better if they keep their phones in their pockets, that I don’t see it because as soon as I see it, I struggle to keep my body away from it and I embarrass myself when I grab their phones.
I like to learn other languages by looking at known stories that were translated into different languages. I also like to put the pictures together in different ways so that I then make my own stories in my head.
I also want to tell of the benefits of my tablet.
It is very nice for me to play with my tablet, but there is also a very bad side to playing with my tablet.
That’s when I get stuck on a specific story or place on my tablet. It makes me just as crazy as for the people around me when I play the same thing over and over and over again. It is just as extremely irritating to me as for the others who are watching or hearing it. It’s just my body getting stuck. I actually want to listen and watch other stuff, but my body gets stuck in the same path, repeating itself over and over. It is very bad when it happens.
There is stuff that I like very much, as in Lion King when the daddy Lion shows the baby lion to the other animals, but I’m too afraid to look at it. I know for sure that my body is going to get stuck. It is like my body get sucked in by a whirlpool, and then I cannot escape for the life of me. This is my biggest obstacle if this happens. My parents think I am terribly fond of Lion King and they like to put it on for me, but actually they make me pretty scared when they do. It’s my worst if they think they’re doing well, but actually I just want to shout “help me to do something else”. There are other stories that do the same as Lion King, but for me, Lion King is the worst whirlpool. If someone is letting me choose what I want to watch, my body will always choose Lion King, though it scares me. This is the horror of my stupid body. It does not do what I want it to do. That is why my tablet is my friend and my enemy.
Before I could spell or write, I sometimes tried to communicate by using the IPad to try to get messages out. For example, I played some parts of my stories over and over to try to get my mama’s attention and send a message to her, but she only started understanding that I was trying to send her a message in this way after she realized I was smarter than everyone thought, when we started with Spelling to Communicate.
I understand why parents get discouraged from watching the same stories over and over, because it is just as boring to me as to them. I ask very nicely that parents should help their children get out of that whirlpool of that same story over and over.
It was my favorite pastime to watch stories like Barney and the Loflaaities, as it had other children in. I was so alone in my jail without communication, that the children in the Barney stories were my only company. That’s why I’d like to watch it. The story of Nemo was beautiful for me because it had the fish with a too small vin and he had an great adventure. I also like stories that look like the characters are talking to me, because then I imagine me talking back to them like a child with a voice. There were many years when no one knew I was clever and can think about things. That’s why nobody spoke to me as if I understood and could speak back. I am now grown up and I want to watch other stories now that older children are interested in, but now my body gets stuck on those kids stories I started watching years ago.
It is hard to talk about the past, but it is necessary so that other children who are not as privileged as I am, can also be helped.
I sometimes get so anxious when I don’t get the tablet, I lose it completely. This is a tough balance, because sometimes my tablet helps me to calm down. The familiarity of the old story and the fact that I know what is going to happen is reassuring and I can also manipulate it as I wish. When I want to use it to calm down, and I don’t get it, I get terribly anxious. It is a way to calm myself, but also sometimes my worst enemy. If my body gets stuck at the same place, it won’t calm me, but makes me fret again.
My only advice for parents is to have a good relationship with their children, so they can see when the tablet is upsetting their child and when it’s calming them. The problem is that the same thing can calm and upset me. It’s hard to see what is the right one, when to take the tablet away and when to give it.
When I know beforehand that the electricity is going to be down, or that there is not going to be signal, I’ll be able to handle it. But if this happens unexpectedly, I get very anxious. I prepare myself by looking for something I can use in the tablet’s place to keep my brain busy.
That’s what the tablet actually does for me. It is a way to keep my brain busy. If I have something else to keep my body and my brain occupied with, I don’t need the tablet. That’s why my body goes to my tablet if I don’t have anything else to keep my brain busy with. I don’t know how addiction is, but my body needs the tablet to calm down. But if I get stuck on something, it loses its ability to calm me down.
Ek wens my mamma wil haar eie storie vertel. Sy is my grootste inspirasie en ondersteuner sodat ek kan doen wat ek nou doen.
Om vir die wêreld te vertel dat kinders soos ek dalk dom lyk, maar slim is met baie mooi harte, is nie aldag maklik nie. Ons is al deur baie moeilike situasies.
My mamma ondersteun my nog altyd. Sy moes al baie keer baklei om my gehelp te kry. Sy doen dit sonder om moeg of bang te raak. Sonder haar, wat my nooit in die steek laat nie, sou ek nooit kon vorder tot waar ek nou is nie.
My mamma het so ‘n mooi hart, want sy probeer ander kinders soos ek, ook help. Dit sukkel om mense te oortuig, maar sy hou aan. Ek is nou al so baie keer met my mamma se hulp deur die wereld gehoor, want sy hou aan.
My mamma verjaar en hierdie is my geskenk vir haar. ‘n Groot dankie is al wat ek het om vir haar te gee, maar dit is my beste manier om vir haar te sê hoe lief ek haar het. Dit is my beste geskenk wat ek vir haar kan gee, want niks wat ek ooit kan koop sal ooit genoeg kan wees om te wys hoe dankbaar ek is vir my mamma nie.
“Lockdown” is soos Kersfees vir my
Please scroll down for English version. Translation to English done by Mom.
“Lockdown” in die middel van die jaar voel soos Kersfees vir my, want ons is almal by die huis en dit is die lekkerste ding vir my.
As ons met vakansie is op die plaas kry ons gesin tyd om lekker saam te kuier, want in die kwartaal moet ons in Worcester bly sodat ek en my sussie kan skool toe gaan. Dit is vir my bitter lekker vandat ek nie meer net sit en ginne gaap in die skool nie, maar om al die tyd saam met my hele gesin te wees is, is vir my die heel lekkerste ding in die lewe.
As ons op ‘n ander plek as die plaas saam kuier, is dit my eerste gedagte dat ek nie met my gesin se behoeftes kan by bly met al die goed wat hulle wil doen nie. Die plaas is my enigste plek waar ek honderd present rustig kan wees oor my andersheid, want hier is niemand wat vir my snaaks aan kyk oor ek nie soos ander mense optree nie.
So, “lockdown” is vir my nie so sleg soos wat dit vir baie ander mense is nie.
Tog besef ek dat “lockdown” nie ‘n grap is nie en dit is iets wat my baie laat dink aan my eie “lockdown” toe ek nie kon kommunikeer het nie. Dit was baie sleg en ek wil dit nooit weer oor hê nie.
My mooiste herinneringe was van die dag toe ek die eerste keer kon wys op die borde dat ek met my mamma kan praat deur te druk op die letters met my potlood. Dit was die mooiste dag en ek sal dit nooit vergeet nie. Ek wil hê dat julle daaraan moet dink wanneer die lockdown verby is, want dit is hoe ek gevoel het. Ek was bly, en ek was bang, en ek was ontsteld, en ek was opgewonde en ook onseker oor my toekoms.
Dit is nou ‘n paar jaar later en ek kan vir almal daar buite sê dat, al lyk dinge dalk nou donker en al is mense bang en onseker, moenie moed opgee nie. Daar is ‘n lig voor in die tonnel. Al vat dit dalk jare, daar is hoop en ons moet dit nie vergeet nie.
- Ek is baie dankbaar vir my mooi sussie wat my so mooi gehelp het. Dankie daarvoor, ek waardeer dit baie. Ek wil graag my blog oor die lockdown opdra aan Lisa, want sy help my baie.
Lockdown in the middle of the year feels like Christmas to me, because all of us are at home and I enjoy that the most.
When we are on holiday at the farm, we get time to spend together as a family. During the school term we have to stay in Worcester for me and my sister to be able to attend school. I really enjoy going to school very much since I am not only sitting around doing nothing at school, but being with my family all the time, is the thing I enjoy most in life.
When we spend time together anywhere else than on the farm, my first thought is that I cannot keep up with my family’s needs and everything they want to do. The farm is the only the place where I can be totally relaxed about being different , because here is nobody that notice that I do not act the same as other people.
So, for me, this lockdown is not as bad as it is for many other people.
I do realise though that lockdown is not a joke. It is something that reminds me very much about my own lockdown when I could not communicate. It was very bad and I never want to have that again.
My most beautiful memories are of the first day I could show that I can talk to my mom by poking the letters with my pencil on the boards. That was the most beautiful day and I shall never forget that. I want you to think about that when the lockdown is over, because that is how I felt. I was happy, I was scared, and I was upset, and I was excited and also uncertain about my future.
It is a few years later now, and I can tell everyone out there that even though things may look bad now, and even though people are scared and uncertain, do not give up hope. There is a light at the end of the tunnel. Even though it may take years, there is hope, do not forget that.
- I am very grateful to my pretty sister who helped me so well. I want to dedicate this blogpost about lockdown to Lisa, because she helps me very much.
My woorde, my beste wapen en gereedskap.
Ek wil begin by my woorde, want dit is my kosbaarste besitting.
I want to start off with my words, because they are my most precious possession.
Ek is so dankbaar daarvoor dat ek nou kan spel en skryf, want dit maak dat ek my mooi woorde kan deel met ander mense. Ek verstaan dat daar ander mense is wat ook mooi woorde het, maar wat my woorde so spesiaal maak is dat ek nie ‘n stem het nie en dat my lyf nie saam met my brein werk nie. So, ek lyk baie dom en onbeholpe, maar ek het hierdie mooi woorde in my kop wat myself verbaas as hulle uitkom op papier.
I am so thankful for being able to spell and write now, because of that, I can share my beautiful words with other people. I understand that there are other people with beautiful words as well, but what makes my words so beautiful is that I do not have a voice and my brain does not work well with my body. So, I look very stupid and incompetent, but I have these beautiful words in my head which surprises even myself when they appear on paper.
Ander mense sukkel om my mooi woorde te versoen met dit wat hulle sien van my lyf en dit het my eers vies gemaak, maar nou is ek bly daaroor. My mamma help my om met ander mense te praat en hulle sien dan dat ek kan praat al het ek nie ‘n stem nie en ek het mooi woorde, al lyk ek soos ek lyk.
Other people struggle to reconcile how I look, with the beautiful words I have. It upset me initially, but now I am glad about it. My mom helps me to communicate with other people and then they realise that I can talk, even though I do not have a voice and that I have beautiful words, even though I look the way I do.
My woorde is my beste “tool” om die wêreld te vertel van my outisme en om met maats wat soos ek is te help om ook hulle woorde uit hulle dom en deurmekaar lywe te laat kry. Ek is baie dankbaar vir my mamma, want sy is ‘n baie goeie kommunikasie en regulerings vennoot (CRP) vir my. Ek wens my maats wat soos ek is het ook sulke goeie CRP’s sodat hulle ook gehoor kan word.
My words are my best tool to tell the world about my autism and to help my friends, who are the same as me, to get their words out of their stupid and dysregulated bodies. I am very grateful for my mom, because she is a very good Communication and Regulation Partner (CRP) to me. I whish all my friends, who are like me, can also have such good CRP’s for them to be able to be heard as well.
My woorde is ook my sterkste wapen teen my eie mooi gemoed se donker dae, want as ek enigsins moed verloor oor ek so sukkel met my lyf, sal my woorde altyd die ligpunt wees waaraan ek vashou en wat my so baie help dat ek nie mistroostig raak oor my lyf wat my soms so kwaad maak nie.
My words are also my strongest weapon against my own mind’s dark days. When I feel like losing hope because I struggle so much with my body, my words will always be the ray of light which I can hold on to and which keeps me from not getting to despondent about my body which makes me so angry sometimes.
April is outisme-maand, maar outisme is my lewe. Elke dag is outisme-dag vir my. Outisme is die ding wat my lewe elke dag anders maak as vir meeste kinders van my ouderdom.
April is autism month, but autism is my life. Every day is autism day for me. Autism is the thing which makes my life different from most kids of my age.
Outisme is nie so sleg soos wat meeste mense dink nie. Outisme is my lewe, so ek weet waarvan ek praat as ek dit sê.
Autism is not as bad as most people think. Autism is my life, so I know what I am talking about.
My outisme is nie ‘n las nie. Ek is bekommerd dat mense dink dat outisme net sleg is. Dit is my wens dat ek die wêreld se negatiewe konnektasie van outisme kan verander.
Autism is not a burden for me. I am worried that people think that autism is only bad. It is my wish to change the world’s negative conoctation of autism.
Ek is so spyt niemand kan in my kop sien hoe outisme my brein laat werk nie. As mense kon sien, sou hulle verstaan hoekom outisme nie ‘n slegte ding is nie. Ek is so vies as mense net sleg praat van outisme, want dit is eintlik ‘n baie mooi ding wat my lewe soveel interessanter maak as wat ander mense s’n is.
It is such a shame that nobody can see in my head how autism makes my brain work. If people could have seen, they would have understood why autism is not such a bad thing. I get very upset when people only say negative things about autism, because it is actually a very beautiful thing which makes my life a lot more interesting than other people’s.
My outisme lyk nie dieselfde as ander se outisme nie. So, ek kan net van my outisme vertel. My outisme is anders, maar dit is ook baie dieselfde as ander kinders s’n.
My autism does not look the same as other autisms. So, I can only tell about my autism. My autism is different, but also very similar to other kid’s autism.
My outisme is so lekker om te hê dat ek dit beslis nie wil weg wens nie. Ek sal nie my lewe wil verander as ek sou kon nie. Ek is uniek geskape en ek is tevrede met wat God vir my gegee het, al is dit nie elke dag maklik nie.
My autism is so nice to have, that I definitely do not want to wish it away. Even if I could change my life, I would not. I am created uniquely and I am satisfied with what God gave me, even though it’s not always easy.
My outisme is my beste eienskap. As ek dit verduidelik, sal ek baie lank moet skryf. So ek wil elke dag van April maand oor iets skryf wat my outisme spesiaal maak en dan kan ons elke week iets post.
My autism is my best attribute. When I have to explain this, I’ll have to write a very long essay. So, I want to write about things that make my autism so special every day of April and then I can post it every week.
Ek wil daarom oor drie goed skryf wat my outisme so spesiaal maak.
I want to write about three things which makes my autism so special to me.
Me and my beautiful teacher Elizna
This is a translation by mom and teacher Elizna of the original “My droom om te dans”.
My mood/emotions and my body are related. I see it as a dance, because they both dance with me. My mood/emotions on the one side and my body on the other. As soon as they do not dance smoothly together, there is trouble. My body tends to pull to the one side and my mood to the other. Then there is extreme confusion. Sometimes it is an immensely difficult battle to interoperate with these two sides of me, but when we do dance in harmony, my life is super happy. I want to tell you what helps me to get this dance right.
My mom is very patient with me. If only I could have been this patient with myself, life would have been much easier for me.
My beautifull teacher Elizna:
She showed me how to draw mindmaps. This helps me to organize my thoughts, in order for me to – when I have a problem – construct clever plans and find solutions.
Her calm demeaner, when she works with me, helped me a lot. As soon as somebody shouts or screams at me, my body immediately gets confused and then my body does not want to listen to my brain at all.
She also showed me how enjoyable school can be when you are understood and accepted. It makes a gigantic difference in my life to be accepted, with all my difficulties and all, like now.
Previously it was impossible for me to regulate myself in the classroom, because I could feel that I was not accepted. It is the most difficult thing for me to regulate myself in an unfriendly environment.
I am really happy now with a teacher that understands how my body and my mind are related.
This is one of the most important things.
My body is my worst enemy when he does not want to cooperate with my brain.
When I notice that somebody gets involved with my struggle and does not allow me the opportunity to solve my problem by myself, then I feel as if that person does not trust me to be able to solve my problem by myself. So, then I feel that I am not accepted.
I appreciate help very much, but I also need space to try things myself, eventhough somebody assists me.
It is also important to me to feel save enough to ask for help when I need it, without feeling judged for not being able to get my body to do a simple task.
It is a very difficult balance to find, because sometimes my mom or somebody else needs to intervene to stop me from keeping on struggling with something. There are situations like that as well and someone will only get it right if they understand me very well.
I also had to learn to accept myself.
That is something I am only starting with, so, I still have a long road ahead of me. It was only possible to start accepting myself because I felt more accepted by the people around me.
It is very important in my process of self-acceptance for me to feel that people appreciate me for my clever brain and do not judge me for my stupid body.
This is so important that I cannot say it enough. It is the most beautiful thing for me when I see my mom’s and my beautiful teacher’s acceptance of me and supporting me in my efforts to accept myself for my good and my bad attributes. It is the best thing when they help me to try and find solutions.
Before I could communicate, I often tried to find solutions myself, but nobody knew about my efforts and I was often judged for my behaviour, while I was actually trying my utmost best to find a solution myself. Now that I can communicate, I can ask for help and discuss my plans with my mom and my beautiful teacher. I am very happy that I am able to do that.
This is also super important.
My body does not show how I feel.
So, if I cannot communicate, I cannot show what bothers me or makes me happy. It is a huge battle when my body does not want to co-operate and I cannot tell with my “pentalker” what the problem is. I then get extremely frustrated with myself as well as the people around me.
My mom often reads and tells me about other blogs she read that was written by other people whose bodies also messes around like mine, and they mean a lot to me. They tell about their struggles with their bodies that does not want to cooperate and that helps me not to feel all alone. I am for ever gratefull to them for their willingness to share their struggles with the world. It makes a huge difference in my struggle to accept myself.
They are the only company I have that is the same as me, because my friends who are in my school, cannot communicate yet. My blogger friends are very special to me. There were times when I was extremely despondent because of my body’s uncooperativeness. I felt as if it was only my body that does this. It helped me a lot when I heard there are other people who have the same struggle as me.
I have a few practical tips to help me with my dance with my body and my emotions.
The one thing that helps me the most, is body engagers, which keeps my body busy while my brain is working.
I love a video about fish which my teacher often plays for me in class. While I am watching the fishes, I am actually thinking very hard. When my body is not busy while I am using my brain, I struggle to control my body and then my body gets me in trouble.
When I am busy with the body engagers, I can think more clearly. When I have to keep my body 100% still, it takes so much effort from me that I cannot think clearly. Then I am totally exhausted from the struggle to control my body and I am then doomed for failure.
It is because I was watching the fishes, that I could write this blog. It also calms me down when I watch the fishes swimming around so beautifully.
I sometimes uses something which texture I like and feels nice to me, to keep my hands busy. This also helps a lot. If that does not help me, I try to get something different to keep myself busy so that I can think.
I like to stim as well, which helps me to keep calm when I get worked up or upset.
I think people have no idea how well I can sense their mood fluctuations. This has a serious influence on my body and my mood. It is very difficult for me to function in the presence of somebody who is not calm.
I have a struggle to stay calm myself. As soon as I get excited, sad, stressed, unhappy or experience any other emotion than calmness, then I struggle immensely to keep my body under control. The emotions confuse my body. So if someone close to me struggles to keep calm, then I have no chance of controling my body. It is especially important to stay calm when it looks like I am busy losing it. It is very difficult for me to turn my mood and my body around when people around me react to my body’s movements and the sounds I make when I get upset. I have to try to keep myself calm, otherwise I am going to lose it in any case. Whether I can turn it around when I am already upset, mostly depends on the people around me.
My ears’ lightning conductors
That is what my noise cancelling headphones and white noise are to my very sensitive ears. These are very important aids to help me with my dance with my mood and my body. The other thing that also helps me is when I cover my ears with my hands, so that the loud or irritating sounds not upset me.
Respect for my hard work to control my body.
It is very important that I should be allowed the opportunity to say when I am done, because then I am too tired to control my body any further. I am then not certain anymore if I will be able to keep my body under control in case I get upset. I appreciate it immenseley if someone respects me enough to give me the opportunity to say if I can no longer hold on.
That implies that I sometimes have to throw in the towel and try again on another day.
It is very important that I should be given this choice so that I know that my body is not going to let me down at a time or place that is humiliating to me.
I will probably never have complete control over my body, but I can work on my reaction on my “out of control” body. Thank you to each person who helped me to understand that. I think this is the most important lesson I’ve learned in my effort to dance in harmony with my mood and my body. I am already managing to control myself, even if I am very upset about something or about something someone said. It is already so much better than it was before, but I still have a long road ahead of me and I still have to work very hard on it every day.